Monday, May 16, 2011

Three Things I Learned Last Week

 Three things I learned last week:

1. Last Tuesday, I learned that nine out of ten times I will be able to carry a baby, a bag of groceries, a water bottle and a set of keys while ascending the stairs without incident. But, there is that one time when I will trip on some invisible object in my new sandals. And, in order to prevent myself from landing on The Baby, I will jam my foot into the rise of a step and break my toe. Broken toes which swell like purple sausages are not only unsightly, but they also make you feel stupid because you cannot help but walk around looking lame( in all senses of the word.). It doesn't hurt anymore, but I can't feel it either. I wonder if it will just continue to turn black and fall off?
I exaggerate, of course. My toe, while that purple was not more swollen that my big toe. It was, however, as swollen as my big toe; and by the third day, the bottom side had turned black. Ick!

2. On Wednesday, I received the results of The Baby's testing. Fortunately she is negative for food allergies. Unfortunately, we learned that the poor thing does have mild reflux. But more concerning, she was diagnosed with gastroparesis (delayed gastric emptying). The pediatrician did not leave me with any more information than a diagnosis as he is sending us to a Feeding Clinic. And then, depending on how the meeting with the Feeding Clinic goes, we will most likely end up needing a consultation with a gastroenterologist. I am trying to learn as much as I can about her condition. The information has made my head swim. Basically The Baby's stomach is not working efficiently enough to digest food- it's not emptying properly and her food just sits there. It explains all of the feeding issues, the infant colic, the current waking at night in pain, the slow weight gain and the weight loss that we have been dealing with since she was a few days old.

I cannot even put into words the amount of guilt that I feel for not having pursued this more aggressively early on. My gut kept telling me that there was something wrong and I kept trying to express it to the doctors; but, they brushed off my concerns because she appeared so content in the office. I feel awful for ever having entertained the suggestion that this was just a personality/ behavioral issue that we just needed to overcome. The poor kid was in pain. Luckily, since it was suggested prior to the testing that she might have reflux, I was able to try a modified diet with her. She is doing better on smaller meals through out the day. Putting her back on pureed baby food has seemed to alleviate the discomfort as well. We have even gotten some nights of uninterrupted sleep (accept for last night). Her gastroparesis is not something that will ever go away; but, if we are diligent, we will be able to manage it with diet.

I cannot help but feel a little bit sad that she will no longer be able to consume the foods that she has come to enjoy like blueberries and peas. I worry that it will limit her gratification of social experiences since so many of our social interactions involve food. I am glad to have this knowledge now- so that we can continue to learn, continue to help her. She will learn at a very young age to be in tune with her body and to advocate for her health. There is a small gift in that.

3. Now that Henry is twelve years old (he just celebrated his birthday on Friday) and is entering a quiet, brooding adolescent phase (as opposed to the quiet, brooding childhood phase), it is so difficult to find topics to talk about with him. There is very little I can offer that will pique his interest to either speak or listen to me. I cannot even entice him, my only non-picky eater, with new or inventive foodstuff. We used to bond at the dinner table over our similar palates. I know that we are following a typical course in the pre-teen/ parent relationship. But, I am sure I was in denial that my Henry would ever close me out. I did, however, learn this week that not all hope is lost. I have an iPhone App to thank for a moment of mutual, unbridled joy. The Fart App, is an invaluable tool which helps bridge the gap between parent and child. The App provides a catalog of gas passing sonorousness which ranges from the sound a duck would make if one were to step on it to the sound of a nuclear explosion.  I did not know that Henry even remembered how to giggle. But, as he took me through the index of characters busting a grumpy, a smile, which had been tucked away for too long, lit up his face. His amusement at my cracking up only made me laugh harder; and, then Princess Commando joined us and we were all goners. Tears streaming down our faces, abdominal muscles aching with a burning joy and intensity. While, a twinge of guilt makes me question the appropriateness of my parenting choices in these situations, it is always squashed by the realization that if I had stifled their sense of humor, I would have missed out on a much needed moment to laugh with them. Farts will always win.

In the immortal words of Shinta Cho: "FARTHEEWELL!"

I knew that I would have a reason to hold onto this awful illustration which was part of a proposal for a children's illustration project that was posted on a few years back. If I remember correctly, the employer who posted the position wanted us to include an illustration of a boy farting in a movie theatre.

Tuesday, May 3, 2011

hear ye, hear ye

She looks like a pirahna in the dark.

I have spoken to the point of extreme redundancy about The Baby's horrible sleep patterns. After my essay about her pacifier whose elusive tendencies seemed to wake her in the middle of the night, I discovered during a follow up visit to our pediatrician that the poor kid was still fighting off an ear infection and was in need of stronger antibiotics. Of course, sleeping would be uncomfortable for her. And, I regret that I ever thought to try to break her of her pacifier habit, her means of self -soothing. Aside from her night waking (which she has done all of her life), I never would have known about her ear. Maybe her new head posture- finger in her infected ear and head pressed against her shoulder was a missed clue? But, I was too exhausted to play detective and still too hopeful that time would resolve whatever kept her from restful sleep. However, I was beginning to worry that she was not speaking as much or as clearly as perhaps she should. She spoke dog, cat, and firetruck fluently, uncannily. An infected ear could have hampered the processing of human sounds- the formation of words. Having been late to diagnose First Born Son's Central Auditory Processing disorder, I am sensitive about early intervention and making sure to inundate her with verbal lessons- auditory reinforcements, to keep her from struggling in school. But, not to fear, in the midst of taking the course of new medication, she presented proof of language acquisition in the middle of the night.

At 4:00 one morning, she woke up with a cry of distress. I dragged myself into her room where I found her pressed against the crib bars with her blanket and her Binky Bunny (the lone Beanie Baby we found in the house- a rabbit holding a carrot- which also now holds a pacifier fastened with a silky ribbon). She looked like she had been there for a while, contemplating the darkness. I knew that she was not going to fall back to sleep easily; and, she probably wasn't feeling well.  I brought her into our bed where she perked up and began to jabber a monologue in the most inappropriately emphatic voice for 4:00 AM. And while she was babbling and gabbling, she was running back and forth between The Mr. and me on the bed. Then, suddenly, she began to punctuate the rambunctious song streaming from her mouth with crystal clear words.

"Badadeeboodadee." "NOSE!" And with that, she would lunge at my face with her sharp pointer finger, piercing my nostril and laughing in pleasure at my wincing.

"Yes, Baby nose. Now go to sleep."

"Badadeeboodadee." " EAR!" And, she stopped in her tracks sticking her finger in the infected ear and shaking her head.

"Yes, Baby, ear. Now go to sleep."

"Badadeeboodadee" "Hair!" Patting her smooth hair and then trying to run her fingers through my knotty curls, with a look of disdain.

"Yes, baby, hair. Now go to sleep."

At 4:00AM, the birds, clueless and inconsiderate, perched outside our window and began to call to one another. The Baby's eyes grew like saucers. She inhaled sharply with excitement and recognition- pointing in the direction of the bird call. Overjoyed to hear them, she began to bounce, "Dirbs! Dirbs!"

"Yes, Baby, damn birds. Now go to sleep."

I still had time- precious little minutes- to recapture some sleep. There was nothing more I could do for her in our bed. Clearly she was fine. She was just excited to practice her new skill. I placed her back in her bed and fell back into mine. But, she was pitching a fit- which grew into a storm of hysterical screaming. I returned to quiet her, as I did not want the other children to wake. When she saw me, the crying ceased and she inhaled that sharp, enthusiastic breath of recognition. "Dirbs! Dirbs!"

"Yes I know. There are birds outside."

But, my answer did not appease her. "Dirbs!" She was frustrated and now pointing to the light switch. I flipped on the overhead light.

She gave me a grin so wide and proud and pointed to the wall mural above her crib that I had painted with old house paint.  "Dirbs!"

"Yep. Them there are birds." And, just like that, satisfied with the effectiveness of her communication and with my comprehension, she went back to sleep. Just in time for my alarm to sound.

There may be more reasons why- besides an ear infection and needing to prove her language skills- that keep the The Baby awake. My mother's intuition has always nagged me- from the time she was three weeks old and gripped by colic- that something is just not right with her. There is something there- always present which makes her uncomfortable- which robs her of restful sleep. I took her for her 15 month old check up and met with one of my favorite pediatricians in our group. For whatever reason, we have not seen him for any of her visits. But, I am so grateful that he was with us on Saturday. For the first time, I got validation for my suspicions- for the ongoing feeding and digestive problems- for my innate and overwhelming concerns for her (which had been brushed off by the other doctors). My little jockey has dropped to the 3rd percentile for weight. She has dropped an whole pound in three weeks. She is not eating well and is uncomfortable after feedings. Finally, we are being sent for testing on Friday and Monday for food allergies and GERD- both would explain the chronic night waking, the painful cries, the chronic ear pain, the slow weight gain- the months of exhaustion. No mother wants their child to have something wrong with them; but, I can not help but wish on all of the stars that something (benign, manageable and treatable, of course) shows up during the testing- so that we can bring her comfort and so that we all can find peace.